After returning from a family vacation to Disney World in October of 2005, my 8 year old son, Ben, complained of pain in his right thigh. We thought he had pulled a muscle from all the walking we had done, so we just had him rest it. The pain persisted for a few days and caused Ben to limp, so we took him in to see his pediatrician. An x-ray was ordered and did not reveal any abnormalities. We were told that Ben had probably strained a muscle or was experiencing growing pains. Then the pain left as quickly as it had come. Three weeks later it was back, but this time more severe. The pain was always worse at night. A second x-ray and blood work were ordered only to again reveal nothing abnormal. Then, once again, the pain disappeared. When it came back a third time it was so extreme that it would wake him from sleep screaming in pain. He was given strong pain medication and muscle relaxers, but they only took the edge off.
Finally, an MRI was ordered and revealed an abnormality in Ben’s pelvis. We were told it could be an infection. We took the MRI films to Johns Hopkins Hospital in Baltimore to be reviewed. Ben was scheduled for a biopsy of the curious spot on his bone on December 29, 2005. On January 4th of 2006 we got a phone call telling us that Ben had Ewing’s Sarcoma, a rare form of bone cancer, in his right acetabulum, the cup-shaped socket of his hip bone. We had an appointment to meet the oncology team three days later. How do you tell an eight-year old that he has cancer? He didn’t really even know what cancer was. Barry and I decided not to tell Ben, to let the doctors do it because they would be able to answer any questions he may have better than we could. We had a million of our own questions. We were complete uneducated about Ewing’s sarcoma. That would soon change. My heart hurt so badly in those three long days that I had to go to my church one afternoon to pray. At the altar I was soon surrounded by both pastors, their wives, the church secretaries, custodians and the youth minister. They each prayed such wonderful prayers for Ben and for my whole family, things I would’ve never thought to say. I could barely form any words, but while listening to these beautiful prayers for my beautiful boy I felt the most incredible peace wash over me. Those prayers reminded me that I serve a mighty God and I needed to turn it all over to Him! Knowing that He was in control and I was just along for the ride made it easier for me to just start doing what I had to do for my son. I went from a sobbing mess to a woman renewed with strength, ready to face this demon.
Further scans and testing told us that, fortunately, Ben’s cancer had not metastasized to other bones or soft tissues in his body. He was immediately scheduled for surgery to put a central-line into his chest. Ben would require fourteen rounds of chemotherapy and sometimes daily blood drawing, so having a central line would allow all that to be done without constantly sticking him with needles. Chemotherapy was rough on his little body, but he handled it as best he could. Not too long after starting chemo Ben lost all his beautiful hair, even his eyebrows and eyelashes. He handled that very well. He also got so good at throwing up that he could tell a joke, puke, and then deliver the punch line without missing a beat. One of his chemo drugs caused horrible mucusitis, where ulcers form in your mouth, down your throat and all the way down your digestive tract to your bottom. That was the hardest part for Ben. He was so uncomfortable that it hurt him to even speak, and sometimes he couldn’t eat for days. He went from a healthy, glowing 55 lb. boy down to a pale, fragile 47 lb. boy. We spent a lot of time in the hospital. Every time his fever went to 100.4 or above we had to go to the emergency room. That happened quite a bit. Once we crossed the threshold of the ER we were admitted for a minimum of two days.
Once Ben was underway with a few rounds of chemo under his belt, we were given a choice of radiation or surgery to try to shrink or remove the tumor. Barry and I researched, questioned, and prayed about what was best for Ben. That was such a hard decision to make, not knowing what either would mean for Ben’s future. We finally decided that we wanted assurance that that tumor was dead, and the only way to do that was to remove it. So after four rounds of chemotherapy, on April 18, 2006, Ben had a right hemi-pelvectomy with partial resection of the femoral head or, plainly, his right hip was removed. That was the longest day of our lives. It took twelve hours. Dr. Kristy Weber, Ben’s surgeon, took my son completely apart, where at one point the only thing attaching his right leg to his body was the flap of skin on the back of his thigh. Every muscle, tendon, nerve, artery, and vein was cut, labeled and laid out on the operating table. She then used two saws to cut through my baby’s bones and take that tumor out. The remaining portion of the pelvis and the femur had holes drilled into them and were sewn back together using fiber wire. Then my son was slowly, carefully put back together. The scar that was left behind looked like a shark had bitten him. Thankfully, the cast covered it until it was healed. Dr. Weber felt confident that the area removed encompassed the entire tumor. Pathology came back days later confirming that, and confirming that the tumor was indeed dead.
After surgery Ben was put into a hip-spica cast—a body cast that started at his chest and went down to his toes on the right side and to just above the knee on his left side—which he wore for three months. An area was left open to allow him to go to the bathroom. He stayed at Hopkins for one week following his surgery. Getting him home was quite an ordeal. We had a special seatbelt vest to use to strap him into our vehicle. Thankfully, we have a van so that he could lie along the backseat. Whenever we went anywhere Ben was pushed around in a reclining wheelchair. He continued to have his chemotherapy every three weeks while in the cast. He had a tutor come to the house for the year that he missed school, so he managed to keep up with his classmates and graduate from third to fourth grade during this time.
Ben learned a lot about himself and others during his confinement in the cast. People would naturally stare at him with looks of pity. This made him very uncomfortable. He quickly learned that a smile and a quick “hi” would change their look of pity into a smile or even open the door to a conversation. That way people would quickly find out that he was “okay,” and needed more prayers than pity. Ben wanted nothing more than to be treated normally. He loves to laugh and to make people laugh. He had three different casts during those three months. Each time he would go in for a cast change he would have to be anesthetized because the doctors would have to suspend him in mid-air while they washed him and wrapped the new cast around his body. The docs always asked him what color cast he wanted before he went in. The last cast was put on in June and Ben knew it would be on through the 4
th of July. He wanted it to be red, white and blue striped. We thought that was asking a bit much of the doctors, but much to our surprise, when Ben came out of the operating room he had the absolute coolest red, white and blue striped cast. He was so happy! The next day his tutor painted white stars on the blue part, so now he looked even more patriotic! That cast was a real conversation piece. He had done really well for being so confined for so long. Toward the end he was getting antsy and agitated, and just wanted to be able to feel a hug. He had always been my snuggly boy who would just curl up into me when he slept…now he was missing that.
Ben’s cast was finally removed on July 12th of 2006. We decided to keep it as a memento. It was like his protective shell for so long. He had gotten so comfortable in it and we were really good at toting him around. When it came off, he was so pale and skinny and weak. He was afraid to move and didn’t want to be touched. He started physical therapy immediately after, which was difficult on all of us. He hadn’t moved in three months and now they wanted him to try to walk. He couldn’t even bend his right knee for a few days. As frightened as he was, he wanted so badly to be on the move again. None of us knew just what he would be capable of doing without a hip. Surprisingly enough, though, Ben moved from a wheelchair to a walker to crutches to a cane to walking on his own in just three months. The doctors had told us it would take up to a year. Losing his hip also meant he lost 1 ½ inches on his right leg. He has to have his shoe built up so that he can walk with an even gait. Ben continued with chemotherapy until he the final round in November 2006. All scans and tests showed him to be cancer-free. The oncology clinic at Hopkins had a big end-of-chemo party for him, complete with a cake and gifts. Doctors, nurses, PAs and friends all gathered to celebrate. It was bitter/sweet. Of course, more sweet than bitter, but we had become so dependent on all these wonderful, knowledgeable, caring people and they had become such a part of our every day that it was hard to imagine not seeing them as often.
Those first few weeks of not being tied to the hospital were just weird. We wondered if we would always have that black cloud that cancer brings hanging over us. Ben did something new every day. It was like having a toddler all over again. That Thanksgiving was the best ever. We had so much to be thankful for. Ben and our whole family had been so blessed throughout this whole journey. We slowly resumed ‘normalcy’ and Ben’s blood counts continued to rise. By Christmas his counts were almost normal, and a whole year had gone by since his initial biopsy. He and his sister, Olivia, had gotten Dance Dance Revolution for Christmas and they loved dancing on it. That was good therapy, too. He was able to start back to school when the Christmas break ended. He was so happy! His central line was removed in February after another round of tests and scans showed him still clear of cancer. He would now go back every three months for follow up scans and testing.
Ben continued with physical therapy and was getting stronger every day. It’s hard to keep a ten-year old down. His hair started coming in nicely. It was great to see eyelashes again. By looking at him, you couldn’t tell that he was any different from any other kid. The only evidence left was the shoe with the lift on it, but that didn’t slow him down a bit. Much to our dismay, it wasn’t long until Ben was on his scooter again. Barry and I did our best to not overprotect him. We were told he probably wouldn’t be able to ride a bike again because of the around motion needed for pedaling. Well, nobody bothered telling Ben that. It didn’t take him long to figure out how to do it without a hip. His physical therapist and doctors were amazed by all that he could do. They even asked us to make a video of him doing all of it so they could share it with their colleagues. He certainly is a miracle! He continues to amaze us every day.
A year and a half has passed since the end of Ben’s treatment. He is doing wonderfully well. It’s hard to keep him still. He loves life. When he’s not outside playing on his scooter, skateboard, or bike, he’s usually playing basketball, video games or just hanging out with friends. He’s always busy. He’s loves music, so his I-Pod is in his ears most of the time. He was just in the talent show at his school, singing
We Will Rock You. He eats like a teenager. I don’t know where he puts it because he’s still thin….but a healthy kind of thin. He’s getting taller every day. He just graduated from the 5
th grade, so he’ll move on to middle school with 8
th grader Olivia next year. He’s happy. He’s healthy. We’re blessed.
Nothing stops Liv Lanman, the Sister of Ben Lanman who worked hard to bake a ton of sweet treats for her bake sale on Saturday, June 21st, 2008.
We are happy to report that we received an order from Japan, and our Volume 1 CD is now traveling across the world in Steven’s memory.
Nancy Beck is a humanitarian who lives in Kentucky, and she has a passion for many things. She loves horses, gardening, and one of her most talented passions is painting.
Stomp Out Cancer has titled this year’s project as "the year of hope." We are now working on our next compilation CD, which will be released on October 28, 2008 - and will tribute those who are fighting or who have overcome the battle with Ewing’s Sarcoma.
